Living with autoimmune diseases and Lichen Sclerosis

Living with autoimmune diseases and Lichen Sclerosis. Part 2

Excuse me for any mistakes. I had a bad night last night with pain and brain fog is surrounding me today.

After my thyroid, I felt my world had fallen apart, but it was to get worse. My daughter was not even a toddler and I had lost my memory, so what I’m writing now is what Ive been told and small bits I can remember. I remember taking my son to nursery and I remember my leg dragging, I didn’t think much of it, just that maybe I was tired. However over the next couple of days it’s got worse, until I couldn’t hardly move it, it just dragged along, then my arm started to do the same. It was time to see the doctor. I referred to a neurologist who told me that after scans that I had MS, and that when I had lost my eyesight before, that it was a demylination and that was when I had my first attack. Now it was showing that I had full blown MS and things were looking bad. In fact I was told I needed to put things in order.

Less than 6 months after seeing the neurologist I was in a wheelchair having my food cut up for me, shortly afterwards I was taken into hospital. I remember the consultant talking to me, but I can’t remember what he said, I didn’t care, I wasn’t interested anymore. I had a baby girl at home and a toddler, I had to get well. It was from that day I changed.

I was in hospital for I believe 3 weeks, but it may have been more. I was given a social worker, physio, and Occupational therapist. Physio and OT would come everyday and work with me. 6 weeks later I would be picked up daily and taken to the neuro rehabilitation centre. There were days I couldn’t cope. I’d started to have fit’s, but they weren’t epileptic, I had no idea what they were, and the neurosurgeon wasn’t worried about them.

6 months of intense therapy, I was no longer in a wheelchair and was walking with crutches, I could feed myself and had surprised everyone how determined and well I was doing. My OT said we should sell up and move as our stairs were dangerous for me and too narrow and steep to be able to do a stairlift.

Less than 5 months later, I had turned everything around, though on crutches I was doing well. We had moved to a bigger house and the stairs were easier to use.

Within a year apart from crutches I was doing well things were looking up. I even came off the crutches and was living a normal life. I would have pain but I was doing well. I was 35 when the next problem hit. I was stiffening up, my joints hurt and I kept getting fevers. I saw a rheumatoid specialist who said he doubted I had rheumatoid arthritis and that I was fat and that’s what was causing the pain. I cried my way home. I was 5ft 7 and was a size 16. My doctor was disgusted. He said I wasn’t fat and that I wasn’t even over weight, but I didn’t want to go and see a specialist again.

Then I had what they thought was another ms flare, I saw a different neurologist and she said it wasn’t MS but probably CFS, I was sent to a specialist, a wonderful doctor named Dr Bansal. The man was incredible, all the pain and fatigue he checked and did every blood test he could find. Turned out that I had CFS, Sjogrens, rheumatoid arthritis and fibroyalgia. These were not all at the same time, this was over a few years of seeing him. He noted that having my b12 injections for pernicious anemia of which I had been diagnosed with just after my thyroid had been resolved using a schillings test, helped when I had it every two weeks. He showed me how to self inject into the tummy, I felt listened to and finally had the reasons I had felt so poorly.

Diagnosis of many other autoimmune diseases started to come in from other specialists. I had been having sharp pains shoot across my jaw, around my eye and all down one side of my face, it was like lightning strikes every few seconds. It got so bad to stop the pain, I had smashed my head up against the wall. I was taken to hospital where they did some tests and came back that I had triginimal neuralgia. The next 3 weeks I spent in bed because I was so reacted to the medication.